A description of the personal and environmental determinants of participation several years post-stroke according to the views of people who have aphasia

Background: People with aphasia face situations of handicap in their daily life and activities for which they were not fully prepared in rehabilitation.Aims: The present research aimed to explore the factors that facilitate or hinder participation according to people who live with aphasia.Methods & Procedures: Seventeen persons with chronic aphasia were interviewed in semi-structured small discussion groups. The transcripts of the discussions were analysed qualitatively by breaking them up into excerpts and regrouping the excerpts with similar meaning.Outcomes & Results: Participants mentioned more factors facilitating than hindering participation. Facilitating factors included: helpful family members, aphasia community organisations and their own positive personal characteristics, such as determination. Barriers to participation were, for example, poorly adjusted speakers and limited services post-stroke. Specific impairments such as communication problems and physical limitations as well as unfavourable identity factors, such as pride and fears, were also described.Conclusions: Rehabilitation professionals should refocus the services they provide to families, couples and friends to ensure that people with aphasia maintain a positive identity, optimal communication and satisfying relationships. Persons with aphasia should be empowered to ask for services in their community post-rehabilitation. Participation-based models of therapy may better serve the needs of people with aphasia and prepare them for living with aphasia.